title: Validating a novel web-based method to capture disease progression outcomes in multiple sclerosis.
abstract: The Expanded Disability Status Scale (EDSS) is the current 'gold standard' for monitoring disease severity in multiple sclerosis (MS). The EDSS is a physician-based assessment. A patient-related surrogate for the EDSS may be useful in remotely capturing information. Eighty-one patients (EDSS range 0-8) having EDSS as part of clinical trials were recruited. All patients carried out the web-based survey with minimal assistance. Full EDSS scores were available for 78 patients. The EDSS scores were compared to those generated by the online survey using analysis of variance, matched pair test, Pearson's coefficient, weighted kappa coefficient, and the intra-class correlation coefficient. The internet-based EDSS scores showed good correlation with the physician-measured assessment (Pearson's coefficient = 0.85). Weighted kappa for full agreement was 0.647. Full agreement was observed in 20 patients who had EDSS scores ranging from 0 to 6; many of those with 100 % agreement had scores of 5.5-6 (n = 8).The intra-class coefficient was 0.844 overall for all cases. Internet-based FS and EDSS show good agreement with physician-measured scores. Agreement was better in patients with higher scores. Overall patient satisfaction with the web-based assessment was high. An internet-based assessment tool is likely to prove an invaluable tool in the long-term monitoring in MS.
authors.affiliation: Barts and the London School of Medicine and Dentistry, Blizard Institute, Queen Mary University of London, 4 Newark Street, London, E1 2AT, UK.
authors.forename: Sara
authors.initials: S
authors.lastname: Leddy
authors.forename: Shahrzad
authors.initials: S
authors.lastname: Hadavi
authors.forename: Andrew
authors.initials: A
authors.lastname: McCarren
authors.forename: Gavin
authors.initials: G
authors.lastname: Giovannoni
authors.forename: Ruth
authors.initials: R
authors.lastname: Dobson
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D004185:Disability Evaluation; D018450:Disease Progression; D005260:Female; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000175:diagnosis* / Q000503:physiopathology*; D010820:Physicians; D012044:Regression Analysis; D015203:Reproducibility of Results; D018709:Statistics, Nonparametric; D055815:Young Adult